What's that.... AS went ahead and put in a whole dang bill with out the input of the greater autism community? Shocked to the core am I.

Once again, AS, while claiming to represent the autism universe, tiptoes behind the back of our community to write legislation that will dramatically impact your family and mine. Autism Speaks corporate shark Exec VP Peter Bell (former worldwide marketing manager of the Johnson & Johnson drug Risperdal, you know, that drug that gives our boys breasts) has brought those same wholesome, forthright values of pharma marketing to the world of autism. *

It is my understanding that Autism Speaks has drafted a CAA reauthorization bill and submitted it to Senator Dodd.

Previously, despite claiming to be a big tent organization, Autism Speaks has used their position to circumvent the larger autism community in order to achieve their own agenda. I see this as yet another bad faith move to bypass autism families to get a new CAA that favors AS and its narrow goals.

Will you release the current copy of the CAA bill that you are working on for Dodd? Will you be inviting other autism orgs like NAA, SafeMinds, Autism Action Network, ARI and TACA to offer input on this bill? Will random autism families or adults with autism be able to collaborate on this, or is the fate of hundreds of thousands of people effected by autism in the hands of three or four people at AS who are just about consolidating their power and protecting their unjustifiably large salaries?

AS is charitable org that raises millions of dollars by claiming to represent the autism community. As such, I believe it is incumbent upon you to be transparent in your CAA dealings and release this draft to the autism community (as it will effect ALL of the autism community). Any refusal to share the bill that AS has already submitted to Dodd should be viewed as highly suspect at best.

If you choose not to release this immediately, then please provide a reason for the back door negotiations being kept secret from those whom you claim to be serving. I plan to write a piece either way on Monday afternoon.

Additionally... please forward me a copy of your 2009 990 as it is not listed on Guidestar and I don't see a copy of it on your web site.

No response.

I can only imagine that it has the very best interests of those with autism in mind, even thought the bill they just pushed through in NY, to the loud opposition of others in the autism community, and to the cheers of the insurance industry, is already hurting our kids. John Gilmore of Autism Action Network made this comment on their recent NY activities:

"In NY Autism Speaks turned a new corner, in that they are now backing legislation that will take away what little health care coverage we have and effectively slam the door shut to access in the future. We have already received a report from a parent in Westchester county who was told by his insurance company that because of the new law (the Governor hasn't even signed it yet) payments for speech and OT will be discontinued. This is exactly what we said would happen."

Does AS work for people with autism, or are they a front for insurance groups and pharma? Did AS actually write the text or were the insurance or pharma lobby party to its creation? Does it include vaccine research? I think we all know the answer to that last question.

I encourage you to call whatever autism group you belong to, large or small, and ask them what the plan is for getting a good bill to the floor.

I would also encourage you to stop giving $$ to Autism Speaks. They are starting to seem to me more like those charities portrayed in the American classic, "Death to Smoochy", rather than one that actually improves the lives of the people whose faces adorn their fund raising posters, and whose difficult stories make them so many millions.

And if you are in NY, you might wanna call the governors office and ask him not to sign AS's anti child, pro-insurance company "autism" bill.

With that I will re run this little ditty that someone put together from their 2008 tax form about where their millions go.

*Update:

I am told that Peter never worked on risperdal, but that he worked on analgesics like tylenol and motrin. Which of course is much bigger problem as Tylenol is believed to be a player in autism causation as it impairs liver function... the liver function that might be needed by a baby who has just been vaccinated with aluminum or mercury containing vaccines to process said chemicals out of the body before they can cause neurological or immune disorders.

Macrophagic myofasciitis (MMF) is an emerging condition, characterized by specific muscle lesions assessing long-term persistence of aluminum hydroxide within macrophages at the site of previous immunization. Affected patients mainly complain of arthromyalgias, chronic fatigue, and cognitive difficulties. We designed a comprehensive battery of neuropsychological tests to prospectively delineate MMF-associated cognitive dysfunction (MACD). Compared to control patients with arthritis and chronic pain, MMF patients had pronounced and specific cognitive impairment. MACD mainly affected (i) both visual and verbal memory; (ii) executive functions, including attention, working memory, and planning; and (iii) left ear extinction at dichotic listening test. Cognitive deficits did not correlate with pain, fatigue, depression, or disease duration. Pathophysiological mechanisms underlying MACD remain to be determined. In conclusion, long-term persistence of vaccine-derived aluminum hydroxide within the body assessed by MMF is associated with cognitive dysfunction, not solely due to chronic pain, fatigue and depression.

June 22, 2010

Because what we need is less oversight of pharma shenanigans in vaccine manufacturing? So much corruption.

From NVIC:

FDA Proposes Dangerous Vaccine Rule Change

by Barbara Loe Fisher

This past spring, the FDA took a hands-off approach to Merck's admission that DNA from a lethal pig virus is contaminating doses of RotaTeq vaccine being swallowed by millions of newborn babies. Now the agency responsible for making sure pharmaceutical products do not hurt people is proposing a Rule Change to give one staff employee the sole authority to allow "exceptions or alternatives" when drug companies want to change vaccine ingredients, such as preservatives (like thimerosal) or adjuvants (like aluminum) or the amount of residual protein and antibiotics in vaccines.

June 28 Deadline for Public Comment

The FDA's proposed change to Requirements for Constituent Materials was quietly published in The Federal Register on March 30 and the deadline for public comment is only days away - on Monday, June 28.

The FDA is arguing that the rule change is necessary to "reduce burdens on industry" and to provide "greater flexibility and reduced regulatory requirements." It gives one FDA staff Director the power to give drug companies the green light to "employ advances in science and technology as they become available" when companies want to make new vaccines really fast and get more bang for the buck.

Will There Be ANY Checks & Balances?

If the proposed Rule Change is put into effect, a vaccine manufacturer could request a change in the content or amount of vaccine ingredients by simply writing a "brief statement describing the basis for the request and supporting data" as part of the original license application or for a pending or approved application. There is no information about how much scientific evidence the drug companies will have to submit to prove the new ingredients are safe; or whether the FDA's Vaccine Advisory Committee will be able to review that evidence; or whether the American public will have a chance to comment before vaccine ingredients are changed.

This does not look like the transparency, public participation and collaboration in government that President Obama said he supports. It removes the checks and balances necessary for good government.

Could Warehoused Squalene Be Quickly Approved?

Last year when federal health officials declared a pandemic H1N1 "swine flu" national emergency, drug companies put a full court press on the FDA to fast track licensure of highly reactive oil based squalene adjuvants and the use of new technology, like insect cells, to make pandemic influenza vaccines. During meetings of the FDA's Vaccine Advisory Committee, the National Vaccine Information Center opposed both the quick licensure of squalene adjuvants, which hyperstimulate the immune system and have been associated with autoimmunity, and the use of insect cells, which could be contaminated with insect viruses. Click here to watch a video, read the entire commentary with live links to 35 references and learn how YOU can take action.

June 20, 2010

"The word "Autism" has become romanticized, occasionally glorified, in public discussions of the neurological disorder. It is literally being stripped of its meaning as a diagnostic label of a mental disorder and is being turned into a different way of thinking, a way of life, a culture. Maybe it is time to start thinking about dropping the use of the term autism in the DSM, abandon the Autism Spectrum Disorder concept and replace it with a more informative, less romanticized, less politicized name ... Synaptic Disorder."

Now that we know something about all the varying things that "autism" is biologically, this 70 year old description of some strange acting kids is almost useless and a drag on the progress of finding causation and treatment. As I often say... it is as useful as diagnosing people with having "The Vapors".

Obama can declare an "emergency" and start turning off access for up to 30 days. But what constitutes an "emergency"? Well remember the last "emergency"? That was when the mildest flu in recorded history was declared an "emergency"?

From NVIC:

Because public health is now considered a matter of national (and international) security, if this bill passes, the President could potentially block websites considered a threat to government-led "countermeasures." Like when there is a "pandemic" announced and websites like NVIC's are critical of the government's mass vaccination program.

ummm... that's me.

Hell No.

If they don't want power lines attacked, THEN GET THEM OFF THE INTERNET.

June 16, 2010

... they are just a description of behaviors, actions, something that is or is not happening, that is obvious to the casual observer.

Autism is merely a description of behaviors... social behaviors, physical behaviors, communication behaviors.

Failure to Thrive is also a description of things observable to the naked eye. Not growing and not hitting developmental milestones.

And of course, SIDS is just not being alive any more.

So why are they being thought of/treated like they are actual stand alone diseases?

There are no more a 'disease' than "Rapid Speech", "Jumping Up and Down" or "Turning Left".

We don't consider "Throwing Up" as a disease.

Doc: "Ma'am, your son has been diagnosed with "Upchucking". There is no scientific consensus on the cause of vomiting, so just take your son home and love him".

Mom: "Thank you Doctor, I am now going to poke you in the eye with the eraser end of this pencil to signify my contempt for your intellectual bankruptcy while posing as a medical healer. Now go find me a real doctor to help me figure out what is wrong with my child".

(replace vomit with autism and you now have glimpsed the 'autism mom' experience).

At least "Failure to Thrive" has a leg up, in that kids with it have a shot at getting a doc that will (after ruling out their Freudian suspicions that mom has "Munchhausen By Proxy") actually examine the child and look for a medical reason for the observable event.

SIDS and Autism? Not so much.

So... reminder to anyone in the medical community who has been taught to investigate vomiting, fever and rash, but to accept that SIDS and AUTISM just some magical thing that happens that we all have to accept, like Leap Year and Lady Ga Ga's career... please reprogram yourselves..

Treat them all the same... as worthy of medical investigation. And understand that when you put on that white coat, you made yourselves responsible to investigate disease processes in your patients. All disease processes. Even the ones caused by your own products and practices.

And when some medical authority teaches you to blow off symptoms and patient reports, tell him to go screw himself, because that is not why you got into medicine in the first place.

June 13, 2010

Someone pointed out to me that Merck's lawyers were in the gallery listening to the Cedillo hearing last Thursday. This brings up a few questions for me.

What is Merck's interest here? (duh.) Is Merck helping out the DOJ in their defense? If so, what help are they offering?

And what of the rumors of Pharma payouts to families in the vaccine court? It is legend that on occasion, when a family has a slam dunk case, the pharmaceutical company that made the vaccine in question steps in privately, offers the family a shocking amount of money, and the case is quietly withdrawn from the VICP. Non-disclosures of course would be iron clad.

This of course protects companies like, let's say Merck, from having their product linked publicly to autism in a court ruling, and prevents precedent from being set.

Was Merck in DC to help out the DOJ? Or are they worried that this will get remanded back to the Special Master with instructions that read: "Do it again, this time with out corruption" and Michelle will win the case, so they are trying to figure out how big a check it would take to keep the Cedillos happy and quiet?

So... to the DOJ... are Merck's lawyers assisting you on this case?

And Merck (or any pharma willing to speak out) have you been paying families to leave the vaccine court to cover your billion dollar assets?

This is supposed to be a non-adversarial process. Is there anything on the planet more adversarial than a Pharma lawyer?

June 11, 2010

"WASHINGTON (CNN) -- The H1N1 flu virus could cause up to 90,000 U.S. deaths, mainly among children and young adults, if it resurges this fall as expected, according to a report released Monday by a presidential advisory panel.

The report urges speedier production of the H1N1 vaccine and the availability of some doses by September..."

Remember this bologna? I thought I would post it again now that the school year is through, and we have seen what kind of garbage/vaccine sales tools are put out by the President's Council of Advisors on Science and Technology.

Do you know how many people died in Maine from the H1N1 virus? 19.

Well sure the death rate in Maine was practically nill... it is a rural state... but what about a place like California, the most populous state in the nation? 579.

Virginia 37Iowa 41New Mexico 58Illinois 111

Are we at 90,000 yet? Are we even approaching that 36,000 deaths per year that CDC claims die from the flu during a typical season?

Estimates range that between four and eight billion dollars was spent on this "pandemic" just in the US. Only a quarter of the population took the shot, and more than 70 million doses are being thrown away (that is mercury.. toxic waste.. hazmat material).

If we were not living in bazzaro world, the media would be raving about the billions wasted, the public would be screaming for hearings and investigations and jail time for fraud, and Barack Obama would have fired all these people and apologized to the American public for this colossal disaster and fear campaign. But apparently Holdren has put quaaludes in the drinking water.

But the really exciting question is... HOW CAN WE MAKE SURE THAT WE GET THE H1N1 STRAIN EVERY YEAR! How awesome is it that CDC reports 36,000 deaths every year and we had less than a tenth of that this year! Why is CDC not partying in the street!? We have found the safest flu ever!!!

June 10, 2010

As you may have noted by my writing, I am not so much a fan of the Vaccine Injury Compensation Program and the "vaccine court". Unjust, unlawful and rigged, that's why.

But when the call went out for people to attend the Cedillo hearing today, I thought, well if I am going to be so critical, at least I can show up for one day and see it with my own eyes.

I had fully expected to come today, watch the bias in action, and write something cynical. But something was different today, that I had not heard before. Allow me to share a bit of what happened, while I will leave the serious examination to the professionals in the coming days.

What was different today? The hearing was run by REAL JUDGES that ask real questions and seem to actually care about justice, fairness and getting to the heart of the science in question.

The Cedillo's lawyer complained to the court that the process was not a fair one, and among the complaints, that the testimony by UK experts, brought in by the DOJ, should not have been allowed in, because the actual data that would be used to check their opinions was not admitted into evidence so that the petitioners could effectively cross examine these government witnesses.

The three member panel of judges (well two of the three) actually put the DOJ in the hot seat and asked about the fairness of going to the UK to find these experts, with out telling the petitioners that they were going or inviting them along, not getting the data needed to back up their experts assertions, and repeated several times that this process was NOT supposed to be an adversarial one, as the DOJ was clearly operating as if it was.

And the DOJ did a lot of stammering, looking down at her notes, trying to change the subject, and finally agreed with one of the judges that there were problems with the way that they carried out the hearing. But claimed that it was justified, because DOJ didn't have enough time to get it right. Only four months. (How long does it take exactly to make a phone call to Theresa Cedillo to say, "hey... we are going to the UK to look for evidence to shoot down your case... wanna come?"?) One judges response... 'too bad'.

Two members of the court (the third seemed to be just taking up space waiting for retirement) were clearly troubled by the process, troubled by the double standard that the DOJ was using in making requests of the Special Master, and troubled by the responses of the DOJ.

And so was the court room. Twice during her testimony, the response to her answers to the judge was met with laughter from the gallery.

Will the case be sent back to the Special Master? Will the UK testimony be thrown out so that the O'Leary Lab results of persistent measles strain infection in Michelle will stand unaccosted? Will the Zimmerman text book which was disallowed into evidence because of a deadline be allowed to be introduced? Will all the new research that has come to light in the last three years be allowed to be included in Michelle's case? One judge was very concerned with the earnest consideration of "monthly/weekly" new understanding in science of brain behavior. Might she send the case back to the special master with instructions to open the case up to new evidence? We can only wait and see my friends. It may take a month or two.

Ultimately, it was good to hear judges that were real judges, and actually concerned about real ethics and real law, make their voices heard in this arena. Which of course confirms my opinion that the sham of the "vaccine court" should be put to bed and vaccine litigation should be heard by real officers of the court who respect the rule of law rather than a band of (poor) cover up artists trying to make it look like they are actually practicing reason and law. Let's hope the Supreme Court agrees in the fall.

Following the hearing, members of our community met to have lunch and talk about the issues. Interviews with many of the attendees, and from EBCALA members, were taped following the hearing will be airing on Autism One Radio. I will post a link when it is up.

For now, pray for Michelle. She and her parents did not attend the hearing today because Michelle's health has deteriorated. Among other struggles she has experienced multiple seizures in the last few days.

At the heart of this case that decides do much, let's not forget that this is about the life and health of a beloved girl. Michelle Cedillo.

I have so much to write about following Autism One and The American Rally for Personal Rights, and so little time, but I wanted to take a minute to share an observation.

Andrew Wakefield is a happy guy.

I don't know Wakefield and only said hello and shook hands with him at the rally for the first time, but I have seen him over the years at conferences and presentations, going back to about 2005. He has always seemed such a sad figure to me. Few smiles, very burdened, and just holding things together and trudging on through the muck.

That said, a quite different fellow showed up at A1. He was smiling and happy and chatty and even bounced a little when he walked. His head was up, his smiles were often and frankly, I am really happy for the guy. I have not asked him, but one can only assume that finally being able to talk about what has been done to him (and having people listen as he is making the rounds in the media and his book reached the Amazon top ten) is doing wonders for his peace of mind.

But then, there is that lesson that the powers that be don't seem to have kept in mind here. When you persecute a man, and take all he has, he has nothing left to lose. If he is a strong enough man to survive the beating, he is not afraid of you any more and you loose any control you had over him. And if he is wise, he will be happy to be free of invisible chains that being in a position of influence in a corrupt system binds one with. I know of quite a few people in medicine that dare not say what they really think, lest they be ousted from the fold. Andy can now say whatever he wants.

So congrats to Andy for being able to take a punch. Well six years worth of punches really. I look forward to all that he will now be able to say and do now that public health, Pharma and the Main Stream Media has done their worst and failed to break him.